‘How can this devastating illness get no attention?’ MP Siobhain McDonagh on her sister’s fatal brain cancer

In the final months of former Labor general secretary Margaret McDonagh’s life she savored the comforts and joys of family, friends and travel, savoring the tranquility on the shores of Lough Corrib in western Ireland, the winter sun in Málaga and a cruise to France and Spain .

In June, her sister Siobhain McDonagh, a Labor MP, planned a party for her sister’s 62nd birthday with a barbecue and a marquee in the garden of their shared home in southwest London.

Margaret, who was made a life peer in 2004, died of brain cancer two days before her birthday and a day before celebrations to mark the occasion at home with her sister at her bedside.

“She touched so many people’s lives,” Siobhain said. “In the weeks that followed, I received daily letters from people I had never met, telling me what she had done for them and the trust she had in them.”

Siobhain supported Margaret throughout her illness and took her to Germany for innovative treatment in the hope of prolonging her life. She was stunned that the five-year survival rate in Britain for someone with a brain tumor had barely improved over a generation. The average survival time for patients with glioblastoma is 12-18 months and only 5% of patients survive more than five years, according to the Brain Tumor Charity.

She said: “Treatment (after surgery) is eight weeks of radiotherapy and then as much chemotherapy as you can tolerate.” This treatment has not improved for 30 years. If you can’t tolerate chemotherapy or have reached the end and want further treatment, it needs to be done not just outside the NHS but outside the country.”

MPs will introduce a 10-minute bill this month that would set a target for the number of brain cancer patients enrolled in trials and require oncologists to be trained in brain cancer.

Margaret, Labour’s first female general secretary, was diagnosed with glioblastoma after collapsing with a series of seizures in November 2021. It is a condition for which there is no cure and limited treatment options. Every year in the UK, around 3,200 people are diagnosed with glioblastoma, which is the most common high-grade primary brain tumor in adults.

Margaret underwent surgery at the National Hospital for Neurology and Neurosurgery in London in December 2021 to remove as much cancer as possible. Treatment was followed by radiation therapy and chemotherapy. Margaret was suffering from an infection and her kidneys were struggling to cope with chemotherapy. There were no other treatment options on the NHS and the family feared further chemotherapy could kill her.

As Siobhain said in a moving speech in the House of Commons in March: “There were no alternatives. There are no exams and there is nowhere to go.” She said the only options available were “the private sector and international travel.”

The family paid for her to be treated privately with two drugs: Nivolumab, an immunotherapy drug, and Avastin, a tumor starvation therapy. These drugs are not available on the NHS for brain cancer. The cost was around £6,000 per month.

In March 2022, the two sisters also began visiting a clinic in Düsseldorf to undergo hyperthermia treatment, in which the tumor is heated to increase the effect of drug therapy. Several clinical studies have shown that hyperthermia helps shrink tumors and facilitates the killing of cancer cells.

Siobhain, MP for Mitcham and Morden, said: “It was a small European clinic. Margaret would be lying on a waterbed and there would be a metal plate that they would put on her head where the tumor is. It is a heat treatment. It would take an hour or an hour and a half.” It was a strenuous travel and treatment schedule.

The combined drugs and therapies appeared to help curb the progression of the disease, with a scan in June 2022 showing no signs of the tumor. But at the beginning of this year, the disease increased and significantly affected her health. Her mobility was severely limited and she was increasingly vulnerable to infections.

Siobhain and Margaret were raised in south-west London by Irish parents, Cumin, a laborer, and Breda, an NHS psychiatric nurse. Their parents have since died and the sisters lived together in south London, enjoying their network of friends, political colleagues and extended family.

Last winter and the spring and early summer of this year, the sisters enjoyed breaks with friends and family, punctuated by visits to hospitals to deal with the infections. Margaret died at home on June 24th. She was described by Daniel Finkelstein, the journalist and conservative politician, as “one of the greatest political organizers in this country, certainly one of the greatest of the last 40 years.”

Siobhain said: “I’m relieved that mum and dad died before this happened to Margaret because they would have been devastated. “I don’t think they would understand that there was no treatment for them on the NHS. No drug study. Nothing.”

She said she was glad the family had the means to pay for private treatment and supportive care. She said: “I’m angry at all the people who can’t do what I did. How can we live in the 21st century and pay next to no attention to an entire area of ​​devastating diseases?”

Paul Mulholland, a medical oncology consultant at University College London Hospitals NHS Foundation Trust who treated Margaret privately, supports Siobhain’s campaign and says some pharmaceutical companies are reluctant to provide drugs for trials because they say it is not financially viable. Develop treatments for glioblastoma. He said: “The rarer tumors are left behind. The treatment will be the same in 10 years if we don’t do studies. We need to work with the NHS and the pharmaceutical industry to run trials for brain tumor patients.” He believes that with a comprehensive trial plan, an effective treatment can be found within seven years.

Siobhain said she had been contacted by several people struggling with the effects of brain cancer and had contacted patients or their families to advocate for more options for those diagnosed. They include Shay Emerton’s family, who are campaigning for the NHS to provide early access to a drug that can slow the growth of brain tumors.

“We’re all confused that there’s just nothing there,” Siobhain said. “And we can make things better.”